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October 16, 2012

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October 16, 2012

I am a survivor of herpes simplex encephalitis which I got in December of 1995. I was out of work for over three months but when I got back, because of who I worked for, I was allowed access to the internet. The first thing I looked up was encephalitis and found a support group run by Debra Caires for the National Encephalitis Foundation which no longer exists. I manually took over receiving/copying/pasting all emails and then when Yahoo offered free 'groups' I signed up and all of the few members joined as well. Wendy Station, also a survivor, contacted me and we became a nonprofit organization, Encephalitis Global, Inc. (www.encephalitisglobal.org). That was about 10+ years ago. Since then, our support group is online through Inspire and we have almost 2000 members worldwide. Enncephalitis is a very rare illness and most doctors have never seen a case so when you as a question about the residuals, they don't really have an answer. Our members are survivors and their caregivers. We ask questions and give advice and let our members know we aren't doctors but a support group. Our group is very active and we have over 200 messages per week.

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Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

June 11, 2011

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1 previous review
June 10, 2010

I am a survivor of HSE and am also one of the founding members of this support group. I took over another group from a woman in Califiornia (Debra Caires) and transferred it to a yahoogroup and Wendy... more

June 11, 2011

We are a support group for survivors of all types of encephalitis, their caregivers, families and friends. We discuss what the residuals of encephalitis are and how to function. Most of us have severe headaches everyday, memory loss, are tired, can't function. Many of us were unable to go back to work and live on disability.

We are a worldwide organization and, for those interested in attending, we will be having a 3-day conference in November (see our website for details).

The Great!

I've personally experienced the results of this organization in...

Our group has over 1100 members. My personal experience has been reaching out to others, getting to meet them, asking questions and giving advice.

Ways to make it better...

If I had to make changes to this organization, I would...

If this group could afford to publish ads in medical journals letting others know that we are out there and publishing informaton about this illness, that is what I would do. I am hoping that more of the caregivers and family who did not have this brain illness would step up and get the word out.

June 10, 2010

I am a survivor of HSE and am also one of the founding members of this support group. I took over another group from a woman in Califiornia (Debra Caires) and transferred it to a yahoogroup and Wendy Station and I formed this group. We have reached survivors and caregivers worldwide and each year we try to have a meeting so that others can meet other survivors face-to-face. You cannot believe how comforting it is to know that you are not alone. Encephalitis is a very rare disease, hard to diagnose and most doctors have never seen a case of it so, to survive is a miracle in itself. The day someone joins this group, they never feel alone again.

The Great!

I've personally experienced the results of this organization in...

Emotional support and information about the disease.

Ways to make it better...

If I had to make changes to this organization, I would...

I wish there were a way this group could reach out to all doctors, caregivers and survivors so they know we're here.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

I am not alone.

The kinds of staff and volunteers that I met were...

Wonderful.

If this organization had 10 million bucks, it could...

Hire doctors to do more research on how to educate medical students, doctors in the ER, etc. and try to find help in bringing back our memories.

Ways to make it better...

We had more volunteers.

In my opinion, the biggest challenges facing this organization are...

Funding. Most survivors are out on permanent disability and they cannot attend our meetings because they cannot afford to.

One thing I'd also say is that...

The group is more of a family to me than my family.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 26, 2010

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June 26, 2010

When I had encephalitis in 1999, it was near to impossible for my family to find helpful information. Some professional medical information could be found, but it was impossible for non-professionals to decipher.

The Great!

I've personally experienced the results of this organization in...

Encephalitis Global has permitted folks to get together and exchange thoughts, ideas and personal experience. It's excellent to know I'm not alone!

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

learning and understanding from others... then sharing what I have learned.

If this organization had 10 million bucks, it could...

travel across North America, speaking with brain injury groups to help them understand.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

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